Having trouble fitting in with other moms!

[airial95]

I can totally relate. I have some friends who are understanding - one of my closest friends is an PICU nurse and another has a child who we all suspect is autistic (her husband is in denial - so they don't have a dx). But even with their "support" I've found myself pulling away. Honestly, by the time I have a few minutes to talk to them and catch up - I'm exhausted and don't feel like doing anything but passing out or vegging infront of some horrible tv (Real Housewives anyone?) with a glass bottle of wine.

 

So in a way, my isolation is self imposed - but at the same time, it's exhausting have a kid with these issues - and I have little time for anyone else!

[Sylvia]

Yeah, other people can be supportive and sympathize, but unless you are living it, you can't possibly relate. Sometimes when I am out in public I will overhear a parent complaining about their kid, and it is such a petty complaint. It just makes me want to shake them and say you have no idea how lucky you are!!! It's like they live on another planet because our lives are SO different. I am over the moon happy for the most mundane things that those other parents just take for granted everyday.

 

I can totally relate. I have some friends who are understanding - one of my closest friends is an PICU nurse and another has a child who we all suspect is autistic (her husband is in denial - so they don't have a dx). But even with their "support" I've found myself pulling away. Honestly, by the time I have a few minutes to talk to them and catch up - I'm exhausted and don't feel like doing anything but passing out or vegging infront of some horrible tv (Real Housewives anyone?) with a glass bottle of wine.

 

So in a way, my isolation is self imposed - but at the same time, it's exhausting have a kid with these issues - and I have little time for anyone else!

[Stephanie2]

Well, thanks for all the responses. It is comforting to know that I am not alone.

 

BTW, as I have said in the past...I went to Miami Children's Hospital today (becoming a regular... ). There is nothing like a visit to a major children's hospital to take you out of your pity party. It can always be worse, I can't even begin to describe the things I saw today. I look at some of these children who are downright deformed in one way or another and I think, ok my life is very very hard, but the difference is that at least I have hope for my children. These other poor kids do not really have the potential for normal life whatsoever. Some are barely aware that they even exist...very sad.

 

There is a light at the end of the tunnel for most of us. We don't know when we will see that light (and sometimes you see the light, come out of the tunnel, but then go back in), but we do know that it is there...

 

BTW, it didn't help this week when my therapist kept asking about pandas as if it didn't really exist or that my kids didn't really have it (sometimes I feel like she wonders if I have Muenchausen By Proxy!). It's just so fun trying to convince ppl that my children are the ones with the mental disorder, not me!! Why does this illness make us moms look so crazy??? Agh!

[nevergiveup]

Stephanie, Take the Insell article from the NIMH into ur therapist, the cunningham results etc... I would hate to think that u r are looking for help from a therapist whom does not understand pandas and what the illness is like. And then if u can wait 10 yrs, go see Emerson, she said today that she wanted to be a psychologist someday. Maybe someday we can all go the Emerson!

Well, thanks for all the responses. It is comforting to know that I am not alone.

 

BTW, as I have said in the past...I went to Miami Children's Hospital today (becoming a regular... ). There is nothing like a visit to a major children's hospital to take you out of your pity party. It can always be worse, I can't even begin to describe the things I saw today. I look at some of these children who are downright deformed in one way or another and I think, ok my life is very very hard, but the difference is that at least I have hope for my children. These other poor kids do not really have the potential for normal life whatsoever. Some are barely aware that they even exist...very sad.

 

There is a light at the end of the tunnel for most of us. We don't know when we will see that light (and sometimes you see the light, come out of the tunnel, but then go back in), but we do know that it is there...

 

BTW, it didn't help this week when my therapist kept asking about pandas as if it didn't really exist or that my kids didn't really have it (sometimes I feel like she wonders if I have Muenchausen By Proxy!). It's just so fun trying to convince ppl that my children are the ones with the mental disorder, not me!! Why does this illness make us moms look so crazy??? Agh!

[Tenacity]

What a "real" and moving thread!

 

It's made me cry -- and it's also comforted me. I'm printing it out, so I can read it again -- and perhaps show it to a few people on the "inner ring" of my shrunken social existence.

 

I have a long list of stories, as I know all you other PANDAS/PITAND/ASD/WHATEVER?! parents (and kids) do. A couple of mine came to the front of my mind, as I read through this thread.

 

About a year ago, on a wildly windy North-Eastern October night, my son had to go to the emergency room for the third time in less than a month -- this time, in an ambulance -- unable to move or speak, drooling, and frightened out-of-his-mind. (He has now been diagnosed with Sydenham's-chorea/PANDAS, but at the time everyone at our local hospital was insisting it was "just a conversion reaction.") Meanwhile, the upper-half of a tree, standing along the border of our property and one of our neighbor's, broke mid-way up the trunk, and the top half fell in the neighbor's yard, on top of their play set. I realized this just before I had to climb into the ambulance with my sick child, and I tried to phone the neighbor, but the number was unlisted, and I was unable to learn the number from Information or from any of the other neighbors I phoned to ask. After we got back from the hospital, my husband and I received an angry, self-righteous letter, chiding us for our neglect, negligence, and insensitivity....

 

Also within this past year, a teacher took the time to tell me how wonderful and "mature" my healthy younger son is. The teacher told me about an occasion when he was guiding a group of kids across the playground, and they passed a group of autistic kids, whereupon all the non-autistic kids began to point and laugh -- except for my son (younger sibling of a severely-ill PANDAS kid for nearly 4 years), who approached the teacher and quietly said, "They can't help it -- it's something happening to their brains."

 

Most people -- and this includes most medical professionals -- do not really understand that the brain can be injured or sick, just like any other bodily organ. When a kid has a brain problem, most people's first impulse is to blame the kid -- or the mother -- or both. A stubbed toe elicits more concern -- not to mention, empathy, sympathy, understanding, and ACTION....

 

It's a hideous experience, enduring the onslaught of cruel, ignorant judgment that follows the family of a child with a brain injury/illness/disorder. But it also separates the wheat from the chaff. I hate all the suffering, but because of that suffering, I now have an extremely low tolerance for the superficial, fake, or stupid. Same for my husband and our two children. And this is a good thing. If we can just survive this awful illness, we will wind up stronger, wiser, more perceptive and empathetic people.

 

"There but for the Grace of God..."

 

Tenacity

[smartyjones]

"There but for the Grace of God..."

 

Tenacity

 

so very, very true, tenacity!

Edited September 25, 2010 by smartyjones